Childhood skin cancer syndromes

Australia has the highest rate of skin cancer in the world. Melanoma is the most common cancer in Australian adolescents. However, there are no existing clinical services for the diagnosis and management of paediatric, adolescent, and genetic skin cancer in Australia.
 
There are several genetic disorders which increase the risk of skin cancer in childhood and adolescence, with substantial negative consequences. New research being conducted by Sydney Children's Hospital and UNSW Sydney aims to identify the psychosocial impacts and supportive care needs of children and their carers, with a skin cancer diagnosis or a genetic skin cancer syndrome. 

Specifically, Xeroderma Pigmentosum (XP) is a rare genetic disorder increasing sensitivity to UV radiation. Little is known about the psychosocial impact of this condition on children diagnosed and their families. Lifestyle factors in combination with environmental conditions mean that Australian children living with XP are particularly susceptible to detrimental outcomes if adequate sun-protection strategies are not used. Life-altering practices often include application of UV filtering to the home and school environments, clothing made from total UV-blocking material, and consistent sunscreen re-application in environments where sun exposure may occur.
 
This information is essential to develop tailored comprehensive clinical services to address not only the medical diagnosis and treatment needs of paediatric skin cancer patients, but also their supportive care needs. 
WHAT IS THE AIM OF THE STUDY?
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This study hopes to develop a greater understanding of the ways children diagnosed with XP and their families have been impacted. Qualitative interviews with children and families will be used to improve understanding and preferences for care. This study will explore the physical, psychological, functional, education and financial impacts of an XP diagnosis. Finally, information needs and preferences for new models of care will be identified to inform future guidelines.

who can participate?

  • Parents/carers of children or adolescents who has been diagnosed with a skin cancer, or a related genetic syndrome.
  • Children (aged 5-18 years) who has been diagnosed with a skin cancer, or a related genetic syndrome.
WHAT WILL IT INVOLVE?
  • You (or your child) will be interviewed via telephone or Zoom at a time convenient to you. 
  • The interview will discuss how skin cancer has impacted your lives, your concerns, information needs, and preferences for care.

note:

You are welcome to chose who in your family you would like to participate. That is, just one of you might feel comfortable talking to the research team, or you might feel it is important for everyone's perspectives to be heard. It is completely up to you. 

how do i participate?

To get involved, please email the research lead, Dr Jordana Mcloone
Email: [email protected]

Participant information sheet and consent form 

This information will be added once approved by ethics. pisc_230427.docx